Introduction

Stanislav (Stan) is an 83 year old who lives with his 80 year old wife Eva and their cat Max, in a two storey council house. He came to the UK from Poland after the war and spent his working life as a coal miner. Stan and Eva have a daughter and son-in-law who live nearby with their 2 children. Stan is an ex smoker (15 pack years) and was diagnosed with COPD at the age of 60 at which point he retired due to his breathing problems. Stan’s last FEV₁was 29% of predicted giving him a grading of very severe obstruction (NICE 2010). He has been admitted to hospital three times in the past year with exacerbations of his COPD.

Section 1 As the practice COPD nurse, you receive a copy of Stan’s most recent discharge letter. He has been discharged with home oxygen and is on maximum inhaled treatment: (taking a high dose inhaled corticosteroid/long acting beta agonist (ICS/LABA) combination inhaler, a long acting muscarinic antagonist (LAMA), and using a short acting beta agonist (SABA) metered dose inhaler – salbutamol – 4-5 times daily through a spacer). No follow up has been arranged. Stan has not attended surgery at all in the past 12 months and his wife has asked if he can have a home visit for his “flu jab” this year. Stan has not had any routine reviews of his COPD for at least 18 months.

Is it important for Stan to have a review of his COPD?

Not really, as he has been seen by the secondary care specialists during his last admission.

Only if he can agree to attend surgery.

He should receive the same standard of guideline-based care as anyone else with COPD.

As he is on maximum treatment he is unlikely to benefit from a routine COPD review.

He should be seen by the community team as he may now be housebound.

indicates the correct answers for this question

Explanation

Section 1 As the practice COPD nurse, you receive a copy of Stan’s most recent discharge letter. He has been discharged with home oxygen and is on maximum inhaled treatment: (taking a high dose inhaled corticosteroid/long acting beta agonist (ICS/LABA) combination inhaler, a long acting muscarinic antagonist (LAMA), and using a short acting beta agonist (SABA) metered dose inhaler – salbutamol – 4-5 times daily through a spacer). No follow up has been arranged. Stan has not attended surgery at all in the past 12 months and his wife has asked if he can have a home visit for his “flu jab” this year. Stan has not had any routine reviews of his COPD for at least 18 months.

It sounds as if Stan is becoming housebound and the care he has received over the last 12 months is likely to have been reactive (just dealing with his acute episodes) rather than proactive (planning ahead to meet his increasingly complex needs). Patients like Stan need more proactive care as their disability worsens but often slip through the gaps in services and as a result their quality of life is significantly impaired (Fletcher 2013).

Section 2 As the practice COPD nurse, you receive a copy of Stan’s most recent discharge letter. He has been discharged with home oxygen and is on maximum inhaled treatment: (taking a high dose inhaled corticosteroid/long acting beta agonist (ICS/LABA) combination inhaler, a long acting muscarinic antagonist (LAMA), and using a short acting beta agonist (SABA) metered dose inhaler – salbutamol – 4-5 times daily through a spacer). No follow up has been arranged. Stan has not attended surgery at all in the past 12 months and his wife has asked if he can have a home visit for his “flu jab” this year. Stan has not had any routine reviews of his COPD for at least 18 months.

What will be the most effective approach to help Stan and his wife?

Ask for a review in the secondary care respiratory clinic.

Refer him to the district nurses.

Send your ARTP accredited healthcare assistant out to do his COPD review and spirometry.

Refer to the Community Matron service or local COPD team.

Call Stan and his wife to discuss their concerns and plan a home visit by the practice nurse or specialist community respiratory nurse/matron.

indicates the correct answers for this question

Explanation

Section 2 As the practice COPD nurse, you receive a copy of Stan’s most recent discharge letter. He has been discharged with home oxygen and is on maximum inhaled treatment: (taking a high dose inhaled corticosteroid/long acting beta agonist (ICS/LABA) combination inhaler, a long acting muscarinic antagonist (LAMA), and using a short acting beta agonist (SABA) metered dose inhaler – salbutamol – 4-5 times daily through a spacer). No follow up has been arranged. Stan has not attended surgery at all in the past 12 months and his wife has asked if he can have a home visit for his “flu jab” this year. Stan has not had any routine reviews of his COPD for at least 18 months.

District nursing teams are experienced in provision of end of life care, however ongoing long-term condition management is not usually their role and Stan will need a comprehensive assessment of his current stage of disease before any referral is made.

Whilst it is likely that Stan has been seen by secondary care specialists during his admission, their focus is usually on managing the acute episode: it is the role of primary care to co-ordinate how Stan’s future needs will be met.

Health care assistants who are trained to ARTP standard are an excellent resource in performing reliable spirometry in COPD. However, it is the role of a registered practitioner with specialist training to review patients with complex long term condition needs, and Stan is certainly in this category.

D is a good option, however not all areas have a community matron service or specialist community respiratory team and their role might be quite specific eg. admission avoidance. The key issue here is to liaise with the wider MDT locally to identify Stan’s needs, share information gained and plan together how those needs will be met. This can be achieved in a number of ways but should involve gaining Stan’s consent and participation throughout this process.

Section 3 You arrange a joint visit to Stan and Eva with the community matron. During this visit a full COPD review is carried out with an assessment of their care needs

What aspect of this assessment does not contribute to prognostication of end of life needs in advanced COPD?

Measurement of Stan’s body mass index (BMI).

Stan’s Forced Expired Volume in the 1st second as a percentage of predicted (FEV₁% predicted).

The number of inhalers he takes and the frequency of their use

Stan’s COPD Assessment Test (CAT) score

The use of Non-Invasive Ventilation (NIV) during his last hospital admission.

indicates the correct answers for this question

Explanation

Section 3 You arrange a joint visit to Stan and Eva with the community matron. During this visit a full COPD review is carried out with an assessment of their care needs

In malignant conditions there is often a time point or stage where care changes from active treatment to a palliative approach, whereas in non-malignant disease this is more a continuum or gradual shift in care (Scullion et al 2012). In COPD it is important to recognise the need to deal with the main symptom of distressing breathlessness by ensuring that patients are concordant with maximum inhaled treatment before considering other strategies to manage this symptom, however this in itself is not a prognostic indicator.

There are well documented difficulties in determining prognosis in COPD. (Pinnock, Murray and Sheikh 2010) but recognised indicators of a poor outcome are hospital admissions: only two thirds of patients discharged after an admission with respiratory failure survive two years. Respiratory failure as a cause of death becomes much more likely as disease progresses, so an FEV₁of 30% predicted or less; the need for long-term oxygen therapy and a falling BMI are all important indicators in determining prognosis. Depression, poor quality of life, being housebound due to COPD can all be identified by high impact scores using validated tools such as the CAT score (www.catestonline.org). These issues all contribute to the burden of symptoms at end of life in COPD and palliative care aims to reduce the impact of this on patients and their families.

Section 4 Stan’s post-bronchodilator FEV₁% predicted during his home assessment is now 22%, he is concordant with all his regular inhaled therapy. He has a CAT score of 35/40 and his body mass index is 17.

What other questions are important during this assessment?
(More than one may apply)

Ask Stan to keep a food diary because he is losing weight.

Ask how many pillows he sleeps with and what his sleep pattern is like.

Ask how often he uses his oxygen and measure pulse oximetry on and off the oxygen.

Ask if he wants to discuss end of life care.

Ask him to tell you about his experiences during his last admission.

indicates the correct answers for this question

Explanation

Section 4 Stan’s post-bronchodilator FEV₁% predicted during his home assessment is now 22%, he is concordant with all his regular inhaled therapy. He has a CAT score of 35/40 and his body mass index is 17.

Falling BMI is very common in advanced COPD: poor appetite due to breathlessness and air trapping combined with muscle wasting due to systemic inflammation and immobility are the main causes of this. Stan should be referred to a dietician for a structured plan to improve the calorie and protein content of his diet. It is important to seek specialist advice before prescribing expensive supplements. A food diary is unlikely to be useful when dealing with inevitable weight loss at this stage of disease.

Stan needs to be assessed for co-morbidities such as heart failure which may be contributing to his breathlessness so question B aims to explore symptoms of heart failure such as orthopnoea and paroxysmal nocturnal dyspnoea: if there is a suspicion of heart failure then a blood test for B type natriuretic peptide (BNP) should be arranged along with other routine bloods that can help in identifying other conditions that might need managing alongside his COPD.

Question C aims to establish if he is using the oxygen as prescribed, generally this should be for a minimum of 15 hours daily, and if it is the correct prescription – oxygen saturations of below 90% breathing room air and above 92% after 30 minutes on his usual flow rate suggest that the oxygen prescription is appropriate, as long as he is not experiencing headaches or worsening symptoms after using oxygen for any prolonged time.

Question E is a better option to open discussion than question D. Asking about Stan’s last admission is a more subtle way of establishing his understanding of his stage of disease and identifying his perception of end of life issues than asking directly: for many patients with COPD and their families, the likelihood that death is near may come as a complete shock to them even when it may seem apparent to health care professionals.

Section 5 Stan and Eva are keen to talk about his stay in hospital and the non-invasive ventilation treatment he received. Stan does not remember much about his admission but felt that he wanted to come home as soon as he could and was frustrated by the fact that he had to stay in hospital and “have all those people poking and prodding him”. He states he has had enough of all that and wants to stay in his own bed at home “whatever happens, because I always sleep better when Max is on the bed”. Eva, on the other hand, felt very frightened by how poorly Stan was and worries how she would cope without the specialist nurses and doctors next time Stan’s chest gets bad. She becomes quite tearful and tells you her arthritis makes it difficult to get upstairs quickly when Stan needs something, and she finds it exhausting being the only one able to fetch and carry things now his breathing is so bad.

What options will help address Stan and Eva’s care needs?

A benefits assessment to help with costs of some help in the home.

Admission to the community matron caseload to co-ordinate care and reduce the risk of an unplanned or panic related admission.

Written information on advanced care planning.

Adding Stan to the palliative care register in the GP practice.

All of the above.

indicates the correct answers for this question

Explanation

Section 5 Stan and Eva are keen to talk about his stay in hospital and the non-invasive ventilation treatment he received. Stan does not remember much about his admission but felt that he wanted to come home as soon as he could and was frustrated by the fact that he had to stay in hospital and “have all those people poking and prodding him”. He states he has had enough of all that and wants to stay in his own bed at home “whatever happens, because I always sleep better when Max is on the bed”. Eva, on the other hand, felt very frightened by how poorly Stan was and worries how she would cope without the specialist nurses and doctors next time Stan’s chest gets bad. She becomes quite tearful and tells you her arthritis makes it difficult to get upstairs quickly when Stan needs something, and she finds it exhausting being the only one able to fetch and carry things now his breathing is so bad.

Stan and Eva need to know that help is available for them, and this will involve the wider multidisciplinary team (MDT). Financial support, planning ahead for the next exacerbation, and considering different options for where this will be managed are all important areas to address. The Gold Standards Framework (GSF) (http://www.goldstandardsframework.org.uk/) is a structured approach that aims to optimise care in the last years of life, for any condition, in any setting. An important element of this is effective communication between the different members of the MDT.

General practices are rewarded for identifying patients suitable for inclusion on this register so that their care is supervised and discussed regularly by the different disciplines involved, with the GP co-ordinating care. For patients with severe COPD who often become “invisible” to primary care in the last year of life, the GSF offers a number of benefits to improve quality of life in the time remaining to them.

The National Council for Palliative Care (NCPC) have a number of useful publications to help patients and health care professionals explore decision making about end of life issues, such as “Planning your future care” (www.ncpc.org.uk). Encouraging Stan and Eva to discuss this with their wider family is important to ensure that everyone is aware of Stan’s wishes, particularly because he has expressed a desire to remain at home rather than be admitted to hospital again.

Section 6 Stan and Eva are keen to talk about his stay in hospital and the non-invasive ventilation treatment he received. Stan does not remember much about his admission but felt that he wanted to come home as soon as he could and was frustrated by the fact that he had to stay in hospital and “have all those people poking and prodding him”. He states he has had enough of all that and wants to stay in his own bed at home “whatever happens, because I always sleep better when Max is on the bed”. Eva, on the other hand, felt very frightened by how poorly Stan was and worries how she would cope without the specialist nurses and doctors next time Stan’s chest gets bad. She becomes quite tearful and tells you her arthritis makes it difficult to get upstairs quickly when Stan needs something, and she finds it exhausting being the only one able to fetch and carry things now his breathing is so bad.

What is the most evidence based treatment option to address severe breathlessness for someone like Stan?

Regular nebulised Salbutamol and Ipratropium bromide (Combivent).

Increase his oxygen therapy.

Titrated oral morphine.

Benzodiazepines as required.

Fan therapy.

indicates the correct answers for this question

Explanation

Section 6 Stan and Eva are keen to talk about his stay in hospital and the non-invasive ventilation treatment he received. Stan does not remember much about his admission but felt that he wanted to come home as soon as he could and was frustrated by the fact that he had to stay in hospital and “have all those people poking and prodding him”. He states he has had enough of all that and wants to stay in his own bed at home “whatever happens, because I always sleep better when Max is on the bed”. Eva, on the other hand, felt very frightened by how poorly Stan was and worries how she would cope without the specialist nurses and doctors next time Stan’s chest gets bad. She becomes quite tearful and tells you her arthritis makes it difficult to get upstairs quickly when Stan needs something, and she finds it exhausting being the only one able to fetch and carry things now his breathing is so bad.

There is good evidence for the role of opiates to palliate breathlessness in patients with advanced COPD where the threshold of conventional therapy has been reached (Rocker, Horton, Currow et al 2009).

Nebuliser therapy is a possible option as it allows higher doses of bronchodilators to be used throughout the day but an assessment of benefit by trial of treatment should be made, as this is an expensive, restrictive form of treatment that carries a possible increased risk of infection if scrupulous hygiene of the nebuliser equipment is not maintained.

Benzodiazepines may be tried particularly where anxiety increases the distress of severe breathlessness but there is limited evidence of benefit in studies. However for patients resistant to the idea of opiates it may be helpful to trial this on a short term “as required” basis to assess individual benefit.

The same issues apply to fan therapy in that there is limited evidence of benefit but it is often helpful to ease the sensation of breathlessness and is a cost effective option. Oxygen therapy should only be altered by specialist health care professionals (and definitely not by patients or relatives) due to the potential for inducing carbon dioxide retention in some patients. Moreover it will not improve dyspnoea unless the underlying hypoxaemia has worsened – again specialist assessment is needed to establish the safe dose of oxygen to correct this.

Section 7 A further review with Stan and Eva is arranged as a joint visit with the community matron and Stan’s GP. They are encouraged to have their daughter and son-in-law present in order to answer questions arising from the information provided about advanced care planning. The extra money from higher rate attendance allowance has enabled them to get help in the home and with Stan’s care in the mornings, helping him to wash and dress. The family have suggested moving their bed downstairs for now as they have a downstairs toilet, and the occupational therapist has completed an assessments for various aids to help with both Stan and Eva’s mobility – a raised toilet seat and perching stool. He has also spent time with Stan going through pacing of activities and positions and techniques to help with his breathlessness during activities. The dietician is due to visit next month.

Stan wanted to think about his treatment options and at the review says he would like to try low dose oramorph, initially at night.

What further areas of discussion are not needed at this stage?

Self-management and the use of his rescue pack.

The side effects of opiates and how these can be addressed.

The possible need for anticipatory medicines to be kept in the house.

Thresholds of treatment (DNAR).

The importance of a “healthy heart” diet.

indicates the correct answers for this question

Explanation

Section 7 A further review with Stan and Eva is arranged as a joint visit with the community matron and Stan’s GP. They are encouraged to have their daughter and son-in-law present in order to answer questions arising from the information provided about advanced care planning. The extra money from higher rate attendance allowance has enabled them to get help in the home and with Stan’s care in the mornings, helping him to wash and dress. The family have suggested moving their bed downstairs for now as they have a downstairs toilet, and the occupational therapist has completed an assessments for various aids to help with both Stan and Eva’s mobility – a raised toilet seat and perching stool. He has also spent time with Stan going through pacing of activities and positions and techniques to help with his breathlessness during activities. The dietician is due to visit next month.

Stan wanted to think about his treatment options and at the review says he would like to try low dose oramorph, initially at night.

E is least likely to help at this stage of Stan’s care, as on an end of life care pathway eating small amounts of whatever he fancies is more suitable advice, although as part of avoiding opiate related constipation incorporating some fibre and plenty of fluid into his diet will be helpful.

Medications to ease possible nausea and constipation due to the oramorph should be available on Stan’s repeat prescription.

Planning for the next exacerbation is crucial in order to care for Stan safely at home (although options such as a palliative care bed in a nursing home or hospice should also be offered) so the need for possible anticipatory medicines in case of a rapid deterioration in this event should be discussed.

Stan and his family need reassurance that his exacerbation will still be treated with antibiotics and steroids, so the correct and prompt initiation of these is important along with stressing that the surgery or community matron should be alerted at the first sign of a worsening of Stan’s condition. Care at home from the COPD team, specialist physiotherapist and matron will enable an End of Life Care pathway to be initiated if his condition deteriorates during the acute episode.

As Stan has expressed a wish to avoid admission to hospital the implications of this need to be explored, particularly the fact that he can change this decision at any point. However thresholds of treatment such as refusal of NIV or cardiopulmonary resuscitation (CPR) can be agreed in advance in writing (a “Do not attempt resuscitation” order or DNAR), and this will then be a legal requirement that carers and healthcare staff must adhere to. This will also include the ambulance service in the event of Stan collapsing at home.

Summary

The barriers to provision of good palliative and end of life care in COPD include uncertain disease trajectory and lack of clinician confidence in identifying and discussing end of life issues with patients, in spite of evidence that many patients with advanced COPD would welcome information about what support is available to them. With careful planning and the support of the multidisciplinary team and evidence based Gold Standard Framework for care, Stan, Eva and their family can have their needs met in the remaining time available and the opportunity for Stan to die with dignity in his preferred place of care.

Scullion, J: Holmes, S; Walmsley, S; Williams, S; Denham, L. (2012) IMPRESS guide for commissioners on supportive and end of life care for people with COPD. On: www.impressresp.com Accessed July 2014

Spathis, A; Booth, S. (2008) End of life care in chronic obstructive pulmonary disease: in search of a good death International Journal of COPD 3(1) pp.11–29

Job code: UK/KOL/14/0011 Date of preparation October 2014

Overall score

Your final score for this case study is

While you will find that working through the site in this way is an effective way for you to develop your knowledge, you might also be interested in developing your practical skills too. Last year nearly 5000 health professionals chose distance learning with Education for Health to improve their competence and confidence in treating and managing patients with long-term conditions.

For more information on how Asthma, COPD and Allergy education can help you to achieve your goals please visit the resource page

You score qualifies you to download a certificate of completion. Just enter your name below and click continue to download your certificate.

This website is supported by an unrestricted educational grant from Teva Respiratory

This website is supported by unrestricted educational grant from Teva UK Limited. Teva UK Limited has reviewed the content for factual accuracy. | KOL/11/028(1) Date of preparation December 2015 Editorial control of educational content remains with Education for Health.